A Mother’s Story : Cerebral Palsy Awareness Week 5-11th October 2015

I have a son, Theo, who is a funny, grumpy, cheeky and – though I say it myself – good-looking teenager. He also has cerebral palsy. When he was born, he weighed 900 grammes, he needed a ventilator to keep him breathing, he was profoundly deaf and had significant brain damage causing quadriplegic spastic cerebral palsy. In addition, his lungs were so weak, he suffered four near-fatal collapses in his first three years of life, requiring him to go back on a ventilator each time and finally to have major reconstructive surgery on his wind-pipe. In total, he spent nearly half of that first three years in intensive care. All in all, not what you’d call a great start in life.

Like many, though by no means all children with cerebral palsy, Theo was born premature: put simply, the more premature you are, the more likely it is that you will have cerebral palsy. Theo was born at 26 weeks gestation – that’s approximately 5.5 months after he was conceived. But since babies are now being kept alive from 23 weeks, far from the number of children with some form of CP decreasing, if anything, that number is going to increase with time.

When you’re told your child has a disability, no one comes to tell you about all the different therapies available and the different educational options – or to advise you which to pursue: it’s up to you as a parent to find out.

I don’t think I’d ever even met someone with cerebral palsy. It was pretty much the limit of my knowledge that SCOPE is the national charity for cerebral palsy, so that’s where I started. It was SCOPE who told me about Conductive Education and Scope who told me that the only place offering it as a full educational programme in Central London was The London Centre for Children with Cerebral Palsy, then called the Hornsey Trust.

I signed up for a first session with a conductor at the centre soon after Theo was first discharged from hospital – about 6 months after he was born. I remember the conductor lying my tiny motionless baby on a mat on a wooden plinth and saying to him “I lift my right arm up, up, up.” Theo looked at her but made no response. “I push my left leg down down down.” No response. “I lift up my head and look at my Mummy.” Nothing. “Right”, said the conductor, “then we’ll just have to do it together”. And as she repeated each instruction, she began to move his limbs and head, so that he experienced the sensation of movement and the sense of control over that movement.

I went back, week after week, for that individual session. I got to know all the songs, all the chants, the order of all the bodily movements. Gradually, very very slowly, something began to happen: Theo started to initiate some movement. At first it was tiny: the flicker of a muscle. Then it was a slight rise of an arm. Then a tiny bend of a leg. Eventually, a struggling, triumphant attempt at a roll.

By this time, we’d joined a weekly Parent and Child session with two or three other babies at Hornsey. For a couple of hours on a Tuesday morning, our children would go through a lying, crawling, walking and sitting programme and we as parents would learn how best to handle them. “I keep my feet flat, flat, flat. I keep my back straight and I keep my head in the middle” we would all chant, willing them to demonstrate. That was when I learnt quite how determined Theo really is – and how much competition motivates him.

From there Theo moved to a part-time place in the nursery and then finally a full time place. Over the years at LCCCP, I watched him grow stronger and more able by the day. But if I’ve given the impression conductive education is JUST a physical programme, I’ve way undersold it. Throughout all the years there, Theo was always incredibly keen to go to school and keen to learn and I can’t help thinking this is because what conductive education taught him, right from those earliest times, is that, despite a very significant disability, he could LEARN. For children like Theo, learning that you CAN control your body is key to them learning other things – and that’s why conductive education weaves so seemlessly into the National Curriculum. By dint of the extraordinarily close individual attention the London Centre gives children and the huge amount of positive feedback, they do maximise their functional independence. But they ALSO fulfil their academic potential and develop a real love of learning. And for all those reasons, I shall be eternally grateful to the highly expert and dedicated team who educated my son there.

Theo is not going to run a marathon; he’s never even going to walk independently, but the progress he HAS made is extraordinary given his starting point in life. He’s just completed his first work experience at Tesco; he’s on the school council; he goes biking and swimming twice a week; he goes to music school on a Saturday and sings in a choir; he loves water rides and theme parks; he can read, he has computer skills which far outstrip mine, he’s continent, he can feed himself; and – most significant for a child who was once thought unlikely to use much speech – he talks non-stop and has developed a fine line in asking awkward questions.

Each Summer, he goes on a two-week mainstream summer camp and is totally relaxed about not knowing anyone before he goes, including the people who have volunteered to be his personal carers. When he came back this year, he had at least four new best friends. I thought you might like to hear what the camp leaders wrote about him: “ Theo took part in every aspect of camp life: he cooked, built fires, collected water and always joined in campfire songs. He kept us laughing through the rainy days and was amazingly confident with staff and children alike . He’d often remind us just how much fun we were having by shouting “We’re having a giggle.”” I don’t really think you’d find many able-bodied 14 year olds with such confidence, let alone someone with Theo’s disabilities. Thanks to conductive education, what you now see with Theo is what you get: a happy, confident, capable child.

There are children with cerebral palsy who can and should be in mainstream education. But Theo is not one of them. Children like him, with their plethora of specific difficulties, really need the unique education that The London Centre offers: without it, they simply will never reach their potential. With it, the sky is the limit.

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